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Sam Spence

LIS 5143 Annotated Bibliography

12/11/2007

Issues in Bioethics which might create a dystopian future similar to GATTACA

1) Genetic Non-Discrimination  U.S. House. Committee on Education and the Workforce. Genetic NonDiscrimination: Examining the Implications for Workers and Employers Hearing, 22 July 2004. Washington: Government Printing Office, 2004. (http://www.access.gpo.gov/congress/house)  This hearing deals with issues of genetic profiling. It recognizes the potential for employers and insurers to discriminate against people with high genetic risk factors.  “With this unprecedented potential for discovery, however, comes an equally weighty challenge for public policymakers. The possibility of unjust use of genetic information about individuals and their families must be addressed.” 2) Cloning, Embryos and Genetics  The President’s Council on Bioethics. Human Cloning and Human Dignity: An Ethical Inquiry. Washington: Government Printing Office, 2002. (http://bioethics.gov/reports/cloningreport/index.html)  This report tackles the moral issues of cloning and genetics with an eye to presenting a course of action to the President. They recommend a ban on cloningfor-reproduction, are split on cloning-for-research and also recommend that all genetic research go on hiatus while it is evaluated morally.

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“Rather, cloning represents a turning point in human history—the crossing of an important line separating sexual from asexual procreation and the first step toward genetic control over the next generation. It thus carries with it a number of troubling consequences for children, family, and society.”

3) Stem Cell Research  The President’s Council on Bioethics. Monitoring Stem Cell Research. Washington: Government Printing Office, 2004. (http://bioethics.gov/reports/stemcell/index.html)  The purpose of this report is to clarify the legal, ethical, scientific and medical aspects of stem cell research. Though a lofty goal, the Council only tries to understand these topics and makes no recommendations. The report’s aim is to allow people of all technical expertise to understand the issues.  “Our desire has been both to understand what is going on in the laboratory and to consider for ourselves the various arguments made in the ongoing debates about the ethics of stem cell research and the wisdom of the current policy. Although both the policy and the research are still in their infancy, the Council is now ready to give you and the American people an update on this important area of research.” 4) Reproduction and Responsibility  The President’s Council on Bioethics. Reproduction and Responsibility: The Regulation of New Biotechnologies. Washington: Government Printing Office, 2004. (http://bioethics.gov/reports/reproductionandresponsibility/index.html)

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This report deals with bioethics as they relate to human reproduction. The report weighs the potential benefits of various sorts of genetic reproductive assistance against the pitfalls of introducing such technology into our culture.

“The promotion of justice and equality, including equitable access to the use and benefits of new technologies, equal respect and opportunity in a world that places great emphasis on genetic distinctions, and the prevention of discrimination against or contempt for genetic ‘defectiveness’ or ‘inferiority.’”

5) Alternatives to Embryonic Stem Cells  The President’s Council on Bioethics. White Paper: Alternative Sources of Pluripotent Stem Cells. Washington: Government Printing Office, 2005. (http://bioethics.gov/reports/white_paper/index.html)  This report details methods for obtaining stem cells with the same properties as embryonic stem cells without destroying an embryo. The report details four such methods and discusses their respective strengths and weaknesses.  “…the worthy goals of increasing scientific knowledge and developing therapies for grave human illnesses come into conflict with the strongly held belief of many Americans that human life, from its earliest stages, deserves our protection and respect.” 6) Genetic Screening and Testing  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report on Genetic Screening and Testing. Paris: UNESCO, 1994. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2305&URL_DO=DO_TOPIC&URL_SECTION=201.html)

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This report considers problems associated with genetic screening and testing under five categories: “ethical limits to genetic screening and testing”, “public policy in genetic screening”, “genetic information and privacy”, “education and civic freedom” and “accuracy and quality control”. The report goes on to suggest ethical solutions to these problems.

“Experience in some countries has already shown that problems may be raised in connection with employment and insurance.”

7) Human Gene Therapy  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report on Human Gene Therapy. Paris: UNESCO, 1994. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2306&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report discusses the potential future of gene therapy. The committee expresses reservations about the possible future uses of the technique, such as guided evolution, and discusses the ethical consequences of such technology.  “In thinking about the pace of development of gene technology, however, we do well to recall that Watson and Crick's elucidation of the DNA model is barely 40 years old. The scientific advances since then have come at a breathtaking rate. The pace of advance will accelerate, not slacken.” 8) Ethics and Neurosciences  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Ethics and Neurosciences. Paris: UNESCO, 1995.

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(http://portal.unesco.org/shs/en/ev.phpURL_ID=2301&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report is concerned with the burgeoning neurosciences. While the committee recognizes the potential benefits that neuroscience can provide for humanity, it also recognizes the potential for unjust practices if ethical guidelines are ignored.  “While the neurosciences do bring hope, notably in the area of mental health, they are also a particularly dangerous terrain for genetic manipulation and for the use of pharmacology and computer science for behavioural ends. As a possible instrument of encroachment on human liberty and dignity, the neurosciences may also turn out to be a poisoned chalice on which the worst forms of ideology may thrive.” 9) Genetic Counselling  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Genetic Counselling. Paris: UNESCO, 1995. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2302&URL_DO=DO_TOPIC&URL_SECTION=201.html)  The committee sees this report as directly related to its reports on genetic screening and gene therapy. The repot examines the then current state of genetic counseling and discusses the moral and ethical implications for individuals being counseled and for society as a whole.  “Preventive ethics implies to anticipate new ethical issues, with the aim of protecting the individual (born and to-be-born), his welfare, dignity and freedom, so that progress of scientific research does not infringe on them.”

Sam Spence 10) Human Population Genetics 

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United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Bioethics and Human Population Genetics Research. Paris: UNESCO, 1995. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2303&URL_DO=DO_TOPIC&URL_SECTION=201.html)

This report considers the ethical implications of human population genetics with respect to the traditions and concerns of the population being studied. It seeks to ensure cultural sensitivity and understanding in this practice and to avoid practices similar to eugenics.

“The prevailing attitude in science is that research is in and of itself a good. Therefore, if properly explained and understood, participation should be forthcoming. Communities and populations, however, have their own cultural traditions and histories that need to be understood and respected.”

11) Plant Biotechnology  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Food, Plant Biotechnology and Ethics. Paris: UNESCO, 1995. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2299&URL_DO=DO_TOPIC&URL_SECTION=201.html)  The committee finds in this report that food biotechnology is, on the whole, a positive thing. They believe that the populace has a right to know whether they are purchasing genetically enhanced food or not, but do not share the recent public concern over genetically modified foods.

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“There is a need for research on intellectual property protection for both traditional and new genetics. How do we distinguish inventions from discoveries.”

12) Experimental Treatment  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Ethical Considerations Regarding Access to Experimental Treatment and Experimentation on Human Subjects. Paris: UNESCO, 1996. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2300&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report mainly focuses on the issue of access to experimental treatments and drugs. It concludes that, though medical research regulations are complex and convoluted, their benefit in providing fair access to experimental treatments is valuable.  “Still, it is virtually unthinkable that a body of practice that has had such a beneficial effect in regularizing research procedures should be abandoned because a few difficult problems.” 13) Confidentiality and Genetic Data  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report on Confidentiality and Genetic Data. Paris: UNESCO, 2000. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2297&URL_DO=DO_TOPIC&URL_SECTION=201.html)

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This report establishes a person’s right to keep their genetic data confidential as an extension of the human right to privacy. Several declarations of the right to privacy are quoted.

“The basis for the principle of confidentiality of genetic data is the human right to privacy, which has been recognized in the major human rights instruments adopted after the Second World War, starting with the Universal Declaration of Human Rights.”

14) Embryonic Stem Cells  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. The Use of Embryonic Stem Cells in Therapeutic Research. Paris: UNESCO, 2001. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2144&URL_DO=DO_TOPIC&URL_SECTION=201.html)  The committee takes no specific stand on embryonic stem cells. It urges that each nation develop its own guidelines. It does suggest criteria for donor IVF embryos to ensure that both parents are informed and that alternative stem cell sources be pursued.  “However, the stem cells in which they are particularly interested are derived from the human embryo, and this gives rise to the question: is it ethically acceptable to derive cells from a human embryo prior to its implantation in utero in order to cultivate and investigate these cells in the laboratory for therapeutic research?” 15) Solidarity and International Cooperation

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United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on Solidarity and International Cooperation between Developed and Developing Countries concerning the Human Genome. Paris: UNESCO, 2001. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2295&URL_DO=DO_TOPIC&URL_SECTION=201.html)

This report identifies the importance of sharing information about the human genome. The ultimate risk is increasing the gap between developed and developing countries through the creation of a genetic underclass.

“States rapidly recognized the implications of the new scientific advances, but they have not always been so prompt in undertaking projects of solidarity and international co-operation as set out in the Universal Declaration on the Human Genome and Human Rights.”

16) Ethics, Intellectual Property and Genomics  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on Ethics, Intellectual Property and Genomics. Paris: UNESCO, 2002. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2139&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report deals with the issue of patenting parts of the human genome. In the end, the committee decides that the genome should not be patentable for a variety of reasons.  “The costs of future therapies and genetic tests will become prohibitive for most human beings and nations. Science will be restrained instead of encouraged. And

Sam Spence

LIS 5143

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a remarkable opportunity for humanity to act in a way defensive of the entire human species will be lost.” 17) Human Genetic Data  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Human Genetic Data: Preliminary Study by the IBC on its Collection, Processing, Storage and Use. Paris: UNESCO, 2002. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2138&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report examines the ethical implications of the use of human genetic data. It lays out a set of principles and comments on the practical importance and implications of those principles.  “Every scientific revolution brings with it a host of ethical and social questions. The so-called genetics revolution is no exception, giving rise to a broad international debate on how the undoubted benefits of progress in this area can be reconciled with certain core human values.” 18) Germ-line Intervention  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention. Paris: UNESCO, 2003. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2397&URL_DO=DO_TOPIC&URL_SECTION=201.html)  The committee found that germ-line intervention is not yet possible. As for the ethical implications of pre-implantation genetic diagnosis (used in IVF), the

Sam Spence

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committee maintained a plurality of opinions, as was the case with their stem cell report.  “It is recommended that PGD be limited to medical indications. Therefore sex gender selection for non-medical reasons is considered to be unethical.” 19) International Bioethics Legal Body  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on the Possibility of Elaborating a Universal Instrument on Bioethics. Paris: UNESCO, 2003. (http://portal.unesco.org/shs/en/ev.phpURL_ID=2244&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report examines the possibility of creating an organization to impose ethical practice in biotechnology. The committee agreed that such an organization is a worthy cause and should be supported.  “The initiative of the Director-General of UNESCO in favour of a universal instrument on bioethics deserves support. The UNESCO IBC accepts the challenge of elaborating an international instrument on bioethics. That would serve the interests of the international community as a whole, and of disadvantaged people in particular.” 20) Consent  United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the International Bioethics Committee of UNESCO (IBC) on Consent. Paris: UNESCO, 2007.

Sam Spence

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(http://portal.unesco.org/shs/en/ev.phpURL_ID=11079&URL_DO=DO_TOPIC&URL_SECTION=201.html)  This report examines in-depth the implications of consent in biotechnological practices. It maintains its plurality of opinions and discusses consent in a variety of situations.  “Aware of the difficulties that the practical application of the principle of consent may be faced with, by the present report IBC wishes to enlighten States, organizations and citizens and support the actions they have undertaken or intend to undertake, so that the consent of a person ‘for any medical intervention (…) or scientific research’ be the expression of his/her freedom.”